Does this sound like ALS?

[Livflowers]

Hi! I’m 20 years old and a female

In February I had stroke like symptoms and felt an extreme drop internally in my body, I went to multiple hospitals, did multiple scans and they all said I was fine. I then got extremely sick for about 4 days but all the viruses they tested for were negative. Gave me musinex and sent me on my way. During that time I did have tightness in my calf but it didn’t affect my walking. I also felt like my mouth was weak and I couldn’t talk properly. I developed a twitch in my right leg but it went away.

Then in the end of May I had a hypoglycemic episode where I got extremely dizzy again and the doctors said my glucose was at 48.
Later that week I kept getting really dizzy really fast and felt that tightness in my calf again. During then I also felt extreme burning in my back. A few days later I developed muscle twitching. It started in both of my calves but then progressed everywhere. It was like that for a while and during then I also started to notice some numbness on the left side of my tongue. I felt as though I was only swallowing on the right side of my throat. My left leg also became heavy and just felt very different. I was in and out of the hospitals again with severe panic attacks. It’s been a month and my tongue is still numb on that side. The twitching has calmed but now it’s pretty much only in my left leg and left arm/shoulder and the left side of my tongue. The swallowing seemed to have went away but came back recently. I’m very weak on my left leg, I can still walk fine it just feels VERY different. I have some nerve and muscle pain in BOTH of my thighs and my hips get painful quickly after walking. Some pain also in my left knee.

I seen a neurologist a week after the onset and my clinical was clean but I’m sure it was done too early. I have an EMG scheduled for July 16th. I just had a clear MRI and my ENT doctor recognized deviation on my tongue.

I’m very scared and want to live a long life but so far the only thing that my symptoms are pointing to is ALS.

I’ve attached all results I’ve gotten back so far.

 

[lgelb]

There is no reason to think of ALS, and you have presented no evidence to support it, fortunately. It does not present with the diffuse, intermittent issues that you describe. If you have a glucose metabolism issue, I would certainly address it with primary care.

I have no idea why you seem fixated on ALS, but would suggest you seek counseling to put your fears into perspective and mitigate the panic attacks, though these, too, can relate to endocrine issues. If your PCP is not up for it, a good internist can help.

 

[Livflowers]

Thank you so much for taking the time to reply. Im so sorry to hear about the loss of your loved one and I pray that you receive nothing but happiness in your life
I have an endocrinology appointment the same day as my EMG. I just can't help but worry. My mom is so sad for me because im clearly struggling, but she stated that with her knowledge of ALS its very unlikely that its ALS in the fact that these most recent symptoms have progressed in under a month. She also said that it's close to impossible for me to be having bulbar symptoms already if it was ALS, and that if it was limb onset would've failed by now.

This is true right?

 

[lgelb]

Starting with bulbar symptoms happens for some people. Starting with everything on your list and the exam results you've had, doesn't.
I don't believe you are any more likely to have ALS than that you will wake up with two heads tomorrow.

 

[Livflowers]

Hi! I’m starting to get extremely scared again. The numbness has spread to the bottom of my tongue and I’ve been slurring my words for the past 2 days and also have bad post nasal drip. It’s not really even like a numb feeling but more so like it’s dry on that specific area. My tongue is definitely atrophied but I won’t show any pics. My leg feels less heavy but still weak-ish. And I’m having body jerks. I don’t choke on any water.
But I’m having pain in the strong side of my throat.

My ENT scared me as she says she’s “curious to see what the Neuro says” and that my treatment plan is either gonna be “her and the Neuro or just her” but she did put me on reflux medicine.

I realize I have high anxiety but it’s hard not to when I feel all these symptoms.

I got my wisdom teeth out in April but I don’t think nerve damage in the mouth 1 month later could happen a month and a half later as my symptoms started May 24th (I got my wisdom teeth out April 11th)

 

[ShiftKicker]

Hello-

Please make sure to read here: Read Before Posting. It explains why sensory issues point elsewhere. While you must be very worried, you can eliminate ALS from your list of things to be worried about. Please do return after your neuro appointment to let us know how things went.

Take care

 

[Livflowers]

Got my EMG and my doctor said “absolutely no als or MND” that my numbers were way above the normal range which I guess is a good thing!!

 

[Livflowers]

Still very worried about bulbar, was cleared with my EMG. But I’m slurring and having swilling difficulties. Still a weird feeling on the left side of my tongue. If it was bulbar since I was feeling symptoms in my limbs it would’ve shown on the EMG right? I want to add that my bulbar regions were not tested as the specialist said “if I find something in your limbs I will test your bulbar” he also said my clinical was clean. That was the 16th of July

 

[ShiftKicker]

Hello-

It sounds like you do not believe your doctor despite a very definitive "Absolutely no ALS" from them. I doubt there's anything the people here can say to reassure you, so your best bet is to return to the doctor, explain what you think they missed and have them walk you through why they do not think you have ALS.

 

[lgelb]

There seems to be a pattern of reassurance and new fear going on. Counseling is the best way to address this; clearly, the reassurance that we are providing is inadequate. As we have said, an EMG demonstrating ALS has abnormalities in multiple regions, and in areas that you are not having problems with. The EMG was not done too early, in the wrong muscles, nor do we have any other reason to disbelieve it.

Put it another way -- the only disorder we have evidence of right now is that you have a pathological fear of ALS. Treat that, and I assure you, your life will feel much more like your own.

To help you focus on getting the help you need, I'm closing this thread. Please do not start another.